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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

National Celiac Organizations
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5 posts in this topic

In a post in this topic entitled "Leaving", some interest was expressed about a national celiac organization to get the word out about Celiac Disease to both doctors and potential patients.

While there are currently several "National" organizations, it is my opinion that they are not getting this job done - either because their focus is in other areas, or because they do not have enough resources.

Another contributing factor is the fact that there are SEVERAL of these organizations and they sometimes are in conflict with each other.

What are your thoughts about this? Do we need still another group? Or should we rally behind one particular group who has this as a primary mission? Is this issue (getting the word out) the main issue that needs attention?

Would greatly appreciate any input!

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I think you're right and maybe the groups should merge and then make a TV commercial about celiac disease.

I've been thinking about writing a one page flier about celiac disease, just basic true medical text book info -- nothing but the facts -- and passing the flier out at the local supermarket parking lot, or under the wiper blades of cars (like the advertisements you get when you are in the store) or anywhere. I'd mention how one "gets" it, what tests are done for it, what you do for it (diet), why it's a difficult diet to follow and why you should be concerned (i.e., many people have it and don't know, it could lead to lymphoma of intestine, you can develop it at any point in life if you have the gene for it, and you or your loved ones could get it one day & then you'll want to be able to have resources, like gluten free foods, available).

All celiacs are Celiac Ambassadors to the world to inform and educate people. A little like evangelization of the masses.

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Diabetes, epilepsy, HIV, even penile erectile dysfunction get lots of good press. The organizations that are supposed to help and educate us need to get some public info out for the masses. The problem is, no pharmaceutical company can market a pill to correct celiac disease. Money greases the wheels, and motivates people most. Maybe some of the manufacturers we depend on for gluten-free food will be willing to upgrade their advertising? I didn't know these companies existed until I found this site.

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Hi All

I am doing what I can to get the celiac disease info out. I ordered "Full Life with celiac disease" from CSA, but I find it to be too long and boring for a non-celiac disease person to read. Well I ordered some of them and I have started leaving them in my doctor's offices (ob-gyn, X-Ray lab, chiropractor, etc.)

I have also written my own 1-page flier based on celiac disease info as found in CSA literature. I condensed it to one page and made it read like an advertisement. I've been leaving them in stores. I handed one to a mother of a Girl Scout who was selling cookies in front of our local supermarket. She didn't know what celiac disease was (I was explaining to her why I couldn't buy the kid's cookies).

Funny thing is that 99% of the people I speak to who were born in USA don't know what celiac disease is; but I spoke to the Polish lady next door who still has an accent and she knew right away what celiac is. Go figure!

It's up to us Celiac Ambassadors to enlighten the masses. It appears that all of the celiac disease non profit orgs are not going to do a commercial or magazine advertising any time soon. We have to "hit the streets" ourselves.

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A wonderful lady that I love to visit with at church got an education on celiac disease at our ladies meeting last night. The only thing on the refreshment table that I could have was a cup of Sprite, and she asked why I wasn't eating anything. I make it a point to tell as many people as are willing to listen!

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
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